Is She Sleeping Or Not?

Interests:Mother to girl 4 year old, who probably have narcolepsy with cataplexia. Waiting for a 3 day sleeptest in nowember 2010.

Posted 13 June 2010 - 03:46 AM

We are right now training to do the MSLT test wich my 4 yo are waiting to be sceduled for. And today a cuple of hours after morning awakening when she began to yawn a lot and she asked for candy I then got a good idea.

I told her she would get two gumdrop if she could sleep a little and one if she would only try. And now I'm really unsure if she infact did sleep or not? Her eyes are closed but her body was only still shortly, then her legs makes a little jerk, shifting position like she can't find a comfortable possition to lie in, then she's still again for a min. or two and it all starts over again...

I can see her eyes move under the eyelids, but the breathing never sounds like sleep. But then again the will almost never fall a sleep in quiret and peacefull way, particularly the first 1-2 hours of her night sleep are usually very disturbed...

She said that she did sleep, I asked if she was dreaming and she said yes, but the storry about the "dream" was not really convincing to me, so I only gave her one gumdrop, was that fair or not?

We are right now training to do the MSLT test wich my 4 yo are waiting to be sceduled for. And today a cuple of hours after morning awakening when she began to yawn a lot and she asked for candy I then got a good idea.

I told her she would get two gumdrop if she could sleep a little and one if she would only try. And now I'm really unsure if she infact did sleep or not? Her eyes are closed but her body was only still shortly, then her legs makes a little jerk, shifting position like she can't find a comfortable possition to lie in, then she's still again for a min. or two and it all starts over again...

I can see her eyes move under the eyelids, but the breathing never sounds like sleep. But then again the will almost never fall a sleep in quiret and peacefull way, particularly the first 1-2 hours of her night sleep are usually very disturbed...

She said that she did sleep, I asked if she was dreaming and she said yes, but the storry about the "dream" was not really convincing to me, so I only gave her one gumdrop, was that fair or not?

You are the expert, what do you say?

I can sleep very fitfully when I am experiencing what I call mixed sleep states (Sleep Paralysis, Hypnogogic/Hypnopompic Hallucinations= SPHH, Lucid Dreaming= LD). My husband can often tell by my shallow breathing, weird noises, and occassionally twitching (different from the myonic jerking many people experiencing when falling asleep) . I used to think that I had trouble falling asleep. Sometimes I enter into what I now know is REM right away experiencing SPHH or LD other times laying there for 20-60 minutes seeing swirly color patterns but fully aware and able to move, sometimes tossing and turning restlessly. Turns out the EEG says I fall asleep (on average) in 2 minutes even if I think I am awake the whole 20-40 minute nap (1-2 minutes is typically when I start seeing swirly color patterns forming in the pixalated blackness I see when I close my eyes.) I explained to him that I was not asleep but completely aware. He replies, "Ya, I know I hear that a lot from people with N'" and that stage one sleep is very light but still considered sleeping. Many of us really can't tell the difference between sleep and awake. It was not till I started on the stimulants that I realized much of my life seemed to have been experienced in a kinda foggy neither world. So as far as candy goes it might be better to just give her the same amount each time as it's possible she wouldn't beable to tell the difference anyway.

Interests:Mother to girl 4 year old, who probably have narcolepsy with cataplexia. Waiting for a 3 day sleeptest in nowember 2010.

Posted 14 June 2010 - 01:05 AM

Hi Lisa Kato
Thanks for your reply, it's sure could sound like my dd do sleep and in the future I will give her just the same amount of candy. She did seamed a little fresher afterwards and she also slept at noon for 1.5 hours. So mayby the MSLT test will be no problem, I sure hope so, I will bring lots of toys to play with outside between the naps to make her tired for the naps. I'm pretty sure, that she at most of her naps and when she go to sleep at night have REM sleep right away.

...

The other day she did something really strange, that made me think of microsleep and some kind of Hypnogogic/Hypnopompic Hallucinations I'm not sure? She have these speels where her eyes move from side to side, up and down and sometimes the eyelids will blink and the same time. While she did this, her hands would try to grap something over her head...that I could not see. She said it was a watering can she was trying to catch. It all lasted a minute, then it was over and she was fine.

Hi Lisa KatoThanks for your reply, it's sure could sound like my dd do sleep and in the future I will give her just the same amount of candy. She did seamed a little fresher afterwards and she also slept at noon for 1.5 hours. So mayby the MSLT test will be no problem, I sure hope so, I will bring lots of toys to play with outside between the naps to make her tired for the naps. I'm pretty sure, that she at most of her naps and when she go to sleep at night have REM sleep right away.

...

The other day she did something really strange, that made me think of microsleep and some kind of Hypnogogic/Hypnopompic Hallucinations I'm not sure? She have these speels where her eyes move from side to side, up and down and sometimes the eyelids will blink and the same time. While she did this, her hands would try to grap something over her head...that I could not see. She said it was a watering can she was trying to catch. It all lasted a minute, then it was over and she was fine.

Maybe she really have superpowers.

Keep me posted as to what happens. Has she been tested for seizures? They were gonna test my son (He sees/hears stuff when laying in bed). They were gonna test him but once my diagnosis was confirmend it wasn't neccessary. Best wishes

Interests:Mother to girl 4 year old, who probably have narcolepsy with cataplexia. Waiting for a 3 day sleeptest in nowember 2010.

Posted 14 June 2010 - 11:56 PM

Keep me posted as to what happens. Has she been tested for seizures? They were gonna test my son (He sees/hears stuff when laying in bed). They were gonna test him but once my diagnosis was confirmend it wasn't neccessary. Best wishes

Ohh yes, she has been tested for seizure, also treated for seizures almost two years (drop seizures) but several EEG's has shown no epileptic activity. And the seizure meds. did not make great change in her drops, except for Keppra that made her sleep better, wich made everything better, so for a long time we all believed it was epilepsy. Thank you, I will update when we know more.